Month: April 2013

There is one component of this illness and autoimmune diseases in general which exacerbates the whole experience. The invisibility factor. You can’t see it. Many times when it shows its ugly head, no one is around to bear witness. People see us when we’re out and about and well, or faking it. I’ve lost count of the number of times I hear “But you don’t look sick!” People have a notion of what sick looks like, and this doesn’t fit the bill. One day you’re normal and the next day your plagued with something worse than a flu, or a hangover, but you didn’t do any drinking. It’s just such an enigma on so many levels, besides keeping up appearances, that it’s no surprise people just plain forget you’re sick. And it’s understandable. Because honestly, you forget too.

To this day I find myself committing to things as though I am normal, as though I have boundless energy, as though I don’t spend days in bed sometimes for no real reason at all. My circumstances aren’t normal. And some days I have to remind myself by the hour of my limits. Many times I fail to recognize them and I pay the price. So it’s no surprise that the people we love, the people we’re closest to-friends, lovers, family- they’ll forget too. And it’s easy to see why, but it will make you defensive. You’ll tell yourself they just don’t get it and they’ll never understand! And you’re right, they don’t. It’s impossible to know unless you’ve got it yourself. But don’t let that separate and isolate you more. You’ve got enough boundaries. When someone doesn’t believe you, when someone criticizes you, judges you, or doesn’t give the sympathy you’re looking for, let it go. Meet their disbelief with love and understanding. Because the truth is, if you weren’t sick with this, would you understand it? I know it’d be hard for me. I was young when I became ill but I remember distinctly things coming easy to me. Being a good gymnast. Getting good grades. Good family and friends. A 9-year-old with everything! I had no real reason for pause. I often consider what my life would be like had I not gotten sick and in general it’s with the notion that I’d be a better person living a better life. I really wonder about that now. Being sick and at the mercy of others help and kindness, I’ve learned remarkable lessons in humility and compassion, and those are just scratching the surface. I can’t say who I’d be without illness. But like my mom said once “Who knows? Maybe we if we hadn’t gotten sick we’d just be two capable assholes.”

The point is, when I still my mind and consider all the parts of this, I can understand the doubt, the skepticism, the misunderstanding from others. This is not a well understood disease, even for us sick ones. (But I know that one day it will be. I know that.) I remember once last year, I woke up with a pounding migraine. I was in one of my awful cycles. The first dose of medicine didn’t work so I took two, among my other cocktail of meds. I got out of bed around 1:30, hazy, tired, and the hint of my migraine still masquerading around my head. My boyfriend at the time saw me and said “You’re up! Hey, do you want to go shoot guns today?” At that moment I thought of 647 other things I would rather do than shoot a gun. The mere thought of shooting a gun made my headache perk up like what? huh? guns? Here I come!!! Even the suggestion of that activity made me mad. I felt really misunderstood and alone and thinking what I so often think: if they could only feel what I am feeling, they would understand. And it’s true. I think if most people felt the symptoms of CFS even for ten minutes, they’d have such a better grasp of what we are dealing with on a day-to-day basis. But that’s not possible. So it is up to us to communicate with love to those who don’t know. What we’re dealing with is basically invisible, and getting defensive and trying to prove it will exhaust us even more.

Besides my mom, who is also sick with this, I think about the one person who has been by my side throughout all of this, and has required the least amount of explaining. The answer is Monty. I realize that sounds juvenile. Oh Mary, you crazy dog lady..maybe you should talk to some PEOPLE. And truthfully I probably should. But I think about the number of beds Monty has slept at the foot of. Patiently he waits until I get up. Some days it’s only a minute..we don’t play and he doesn’t seem to mind. He follows me into the bathroom, he follows me out. When I go back to bed, he does to. And this is a very energetic and active dog. He could go all day, literally. But it truly feels like he picks up on sick days. When I wake up in the morning, he always takes some deep breaths really close to my face. It’s like he can tell by smell whether I’m going to get up or not. Sometimes he sniffs and hops out of bed ready to go. Other times he sniffs and goes back to bed. It really is like he knows.

The thing is, Monty doesn’t understand all the weird components to the illness. He doesn’t know what chronic fatigue syndrome is. He doesn’t understand why some days we play and other days we don’t leave the bed. Sometimes for a few days at a time. But he doesn’t even require an explanation or a defense, because what he is exemplifying so beautifully is living in the present. When it’s time to play, we play hard. When it’s time to sleep, we sleep like it’s nobody’s business. Whatever he does, he does fully. He shows up wholly to every moment. And it’s a truly impressive thing to witness. One of my favorite things is to watch Monty when he gets up in the morning. I open the door for him and he walks outside, stops, and sniffs the air for about 15 seconds. It’s like he’s taking in everything from the night and everything that the day will bring. I like watching it because it’s reflective, and we live such busy, fast lives, we constantly neglect reflection. I think it’s fair to say that it’s required for a happy life. We have to stop sometimes. We have to take things in. We have to feel our feelings. (Smell the roses, if you will.)And we don’t need to say it all on Facebook. Some things we should hold inside near our heart. Or whisper it to someone we love.

I am reading a book called Everyday Grace by Marianne Williamson which is incredibly poignant and really well-written. I find myself underlining entire pages. It’s always been a goal of mine to have a book club but of course I’ve never gotten it together and am bad at keeping commitments. So for now the blog will be it. And I invite all of you to read and share your thoughts on these books. I have about twenty more pages and will have a review/summary/dialogue next time. But if you’re looking for a book as a companion..this is a good one. It’s been seeing me through sleepless nights and reading it when I wake up in the morning gives me a happy way to begin the day. One of my favorite lines near the beginning is “We don’t need to push life so much as we need to experience it more elegantly, to be motivated more by inspiration than by ambition.” I like that idea. When I’m not in bed I let my instincts and inspiration guide me…even it’s just sitting on the porch swing and looking at the flowers, which I do a lot. Monty makes me throw a ball and swims laps in the pool. See?

Please just throw the ball.

Anyway, I am working on living a reflective life. I try to take in every moment truly, and feel it genuinely. Even if the moment is sad or fearful. I know that not feeling things through leads to trouble later on. I’ve been there before. For now, I feel happy. The sun is out and the porch swing is calling.

Around New Years this year, while I was half dead in a record-setting cold and dreary Colorado, my sister and I were texting. She said that 2013 would be The Year of the Gelpi, as though it were a new hybrid car that ran on water. Among other things, She was going to get pregnant, and I was going to get better; things we’d both been after for a while, but neither one conquered. It’s hard to keep up hope when day after day you feel exquisitely the reality of your circumstance. I often wished I could just take all my sleeping pills, hibernate like a bear, and wake up in the Springtime. All better. But I was also well aware that taking all my sleeping pills meant dying, like for real, like dead dying. Not the day-to-day I feel like I’m dying dying. And I wasn’t ready to call it quits either. I knew there was more to the battle, so I just held on, because that’s all there was to do.

My sister’s situation was a little different. She and her husband decided a few years ago they’d start trying for a baby. Which really meant, they’d just stop trying not to get pregnant. After a year went by with no “success,” my organized, take-control and conquer side of my sister started to monitor every part of the process. Was his stuff OK? Was her stuff OK? Can teeth whitener lessen your chance of pregnancy? Everything checked out OK. We’re just so used to seeing people sneeze and get pregnant that the word “trying” began to take on real meaning. Finally, on her 30th birthday, on a whim she took a pregnancy test, and to her excitement it was positive. I knew that was the best present she could have gotten that year. Yes she was only 4 weeks along but it’s true–she glowed. It was extremely early so they told very few people, even though I remember thinking it was silly. “Let’s tell everyone!” I didn’t understand the need to be so precautionary. I happened to be staying on their couch 2 years ago because, hello, it’s me, that’s what I do. One morning she woke up and said she felt “different.” She had some strange symptoms, and all of her “pregnant” symptoms seemed to have vanished. I told her not to google them because it would only scare her and it’s best to stay calm. Before she could get in to see the doctor, I looked online and cringed as I read many people’s accounts of an early miscarriage–most described her symptoms exactly. I didn’t tell her what I read. I said everybody and every pregnancy is different and we shouldn’t assume anything until she sees the doctor. I prayed for a better outcome, but when he called the house that night, the results weren’t good. The fetus had stopped developing. He was sorry for the news.

I knew it was really hard for her. I don’t know what it feels like to be pregnant, but I know that after you’ve tried and tried and you finally get it, it must be that much harder to lose. It seemed like an unfair teaser. I’ll never forget my sister, brother-in-law, and me standing in their bedroom when she got the news. She hung up and cried a few tears and Keegan and I hugged her. Then she wiped them away and said “I think I want a glass of champagne please.” Keegan was quick to grab a high quality bottle from the kitchen and three glasses. We also ordered sushi, something she’d given up for the pregnancy, and gorged ourselves. Staying true to our morbid sense of humor, we made terrible jokes and tried to have as much fun as we could while we grieved something we couldn’t see.

They would spend the next year and a half meeting with fertility specialists and exploring all their options when it came to having a child. “Who knew it was this hard?” I remember her asking me one day, and admittedly I did not. For one thing, I’m ashamed to admit I watch that show 16 and Pregnant, and those kids make getting knocked up look easy. Not to mention, we’re in the time of everyone and their mother (haha) getting pregnant.

It’s so easy!It really is quite easy. Cheerio!Someone make it stop.

I mean, if Snooki can accidentally make a baby, certainly this healthy, loving married couple with financial stability should have a solid shot at it. It threw us all off that you couldn’t just shoot some tequila and let the magic happen. Could you?

After two doctors, a few rounds of fertility drugs and one procedure, there was still no baby. The next step was going to be very invasive and very expensive. In late Fall, they decided to hit the pause button on the whole charade. No more fertility drugs. A break from the doctors. They were going to let the rest of 2012 finish with as little stress as possible, and pick up where they left off in 2013. The Holiday’s came. We ate gourmet food and drank good wine. 2013 approached and the funny thing is, that night my sister was texting me that this was going to be our year, she didn’t realize that half of the dream had already come true. Inside, a tiny miracle was beginning. And after learning what all is required to take place in order for life to begin, there really is no other way to put it. It is a miracle. I don’t really mind how cheesy it sounds. I also don’t understand how so many people don’t intend to get pregnant but do, because A LOT HAS TO HAPPEN FOR IT TO WORK. But wouldn’t you know it, they got liquored up on Christmas, and well..you know the rest. Apparently the Snooki method works!

Today is my sister’s birthday and I know that it’s a special one. I haven’t given up that my dream will come true too. She’ll have a baby and I’ll get better. But I’m realistic. I know I won’t just wake up one day healed. The key to getting healthy for me is to be at a point where I can manage it effectively. Where I can function and not spend multiple days or weeks in bed. Where I can be proactive and not reactive with treating my symptoms. And where I can remain hopeful, enthused and optimistic even when I feel the worst of it. I have to learn how to find happiness and peace, regardless of my physical state. And I don’t think it’s impossible. It will take dedication and determination and support, but hey, it’s only April. I’m going to be an aunt again in September, so that gives me five months to get in shape. No matter the state of my health, we’re all looking forward to new life in the Fall. We’ve long awaited that little miracle.

So if I die I want that to be the name of my memoir. Isn’t is perfect? It’s funny yet sadly true. A sick girl-turned-woman living in her parents pool house and on their dime. With a dog. Wait am I a girl or a woman? Now I know how Britney Spears felt when she sang that song. In any case, it sounds like a Fairytale to me. I wonder how this one ends.

What I’m really getting at is that life in my parent’s pool house is great and I recommend that all 28 year olds or young adults in general try it. I had my first night in my new place three days ago. Waking up the next morning in my bed, in my own house was basically spectacular. You have to understand it’s been 2.3 years since I’ve been able to wake up under those parameters and having to wait so long and go through what I did has made the moment even sweeter. If felt like finally exhaling after a ridiculously long tunnel. I laid in bed for the next hour with a pure feeling of gratitude, and that’s all I can really do in these instances. Breath, reflect, take it in and give thanks. If you don’t they pass you by, and you find yourself years later realizing how good you had it only in retrospect. I realize how lucky I am to live in a beautiful house, to call it my own, to have a pool, and to be given help and time to heal, when my givers know I can’t really pay it back. I guess that’s what you call love isn’t it. Did I mention Monty loves it too? He’s also deathly afraid of the polaris but not enough to stay out of the pool.

Evil Polaris EVIL POLARIS

Moving into a house when you’re a sickly takes a very long time. Also having this month-long headache still isn’t helping, but who’s counting? I was overeager in the beginning. I wanted to set up every room and unpack every box and start painting walls all on the first day. It took a little overdoing and paying the price later to realize OK, this needs to happen one room at a time. Sometimes one piece of furniture at a time. And mostly one drawer at a time. It’s ridiculous to me how many times I have to learn that lesson. That overdoing it will be costly and painful, and yet I continue to overdo it and pay the price. And the funny thing is, most people I speak to with this illness (like my mom and everyone at the support group) say they do it constantly. You’d think we’d learn after all these years. We’re a bunch of stubborn dum dums!

Anyway I think the most exceptional part about living by yourself is the amount of time you can spend without pants. Like that first day, after I spent the hour of gratitude in bed, I got dressed and began unpacking and organizing and having these grand fantasies in my head like “And in this room I’ll have scrabble tournaments and in this room I’ll serve afternoon tea.” All of which will probably never happen. After a while my pants were really beginning to bother me. Don’t ask why–sometimes it’s noises and sometimes it’s clothing. And then it struck me that I could take my pants off and keep unpacking because THIS WAS MY HOUSE and at my house PANTS ARE NOT REQUIRED. So I took them off and unpacked in my underwear and soaked up the amazing feeling of being able to do what I want in my own place because I make the rules now. Yeah! Other rules include:

No Bill O’Reilly (Not even an option because I’m poor and don’t have cable but still)

Peeing in the Pool Is Actually Allowed. I know you’re going to do it anyway and come on, we use strong chemicals in there.

No guns.

All dogs allowed! In fact, no humans without dogs.

What happens at the pool house stays at the pool house. Like swimming. And scrabble.

So basically, there are no rules. I just want it to be a happy place and an open door to the people I love. I can’t guarantee I’ll be wearing pants, but hey the world has bigger fish to fry. This other cool thing happened while I was touching up paint the first day. I found my ipod from like 5 years ago and thought I’d play songs on random and be entertained from my 5-year-old playlists. The first song that came on was “Let It Be” by The Beatles and I totally stopped what I was doing and belted that song as loud as I could. I’ve heard it so many times before, but suddenly all the words felt like they were being sung just to me and my life. The lyric that really spoke to me was There Will Be An Answer. Because there will be. One day. Maybe not for many many years, maybe not even in this life on earth, but we will see what our lives mean in the grander scheme of things and we will get an answer to our pain and sorrow. I dream about that moment of clarity and revelation all the time. In the meantime, we just have to hang on. Pick up the pieces. Keep going.

Anyway, I played that song about 6 more times really really loudly and sang it really really loudly because that’s another rule: You can sing as loud as you want. Standing in the kitchen. In your underwear. In fact I recommend that’s how you do it. So below is the song Let It Be and I suggest you play it and belt it and let those words remind you that everything is OK. Even though, I know it’s not. My life is a mess. The world is a mess. I watch the news and I see it. I see war and poverty and violence and corruption and it all makes me feel very small. Very powerless. All I am is a sick kid who calls it a success if I take a shower frequently enough. But it reminds me of a quote from Joseph Campbell. He says:

“When we talk about settling the world’s problems, we’re barking up the wrong tree. The world is perfect. It’s a mess. It has always been a mess. We are not going to change it. Our job is to straighten out our own lives.”

It’s not the most romantic theory about life, but it can be reassuring. When I think about what the world has evolved from, (think even from the Civil Rights Movement to present day) it gives me hope that we will continue to grow. It’s all going to be OK. We’re here. We’re awakening. We’ve survived this much, and that’s what we’ll continue to do.